My son has sleep problems. What can help?

Today’s “Got Questions?” response comes from two clinicians in Autism Speaks’ Autism Treatment Network (ATN). Neurologist and sleep specialist Sangeeta Chakravorty, M.D., is director of the pediatric sleep program at the Children’s Hospital of Pittsburgh; and psychologist and sleep educator Terry Katz, Ph.D., of the University of Colorado School of Medicine and co-founder of the Sleep Center at Children’s Hospital Colorado.

First, know that you are not alone! Many children with autism spectrum disorder (ASD) have difficulty falling asleep and staying asleep through the night. So Autism Speaks’ Autism Treatment Network (ATN) clinicians have been studying how to help them sleep better. One result of this research is the Sleep Strategies for Children with Autism: A Parent’s Guide, made possible by the ATN’s participation in the Autism Intervention Research Network on Physical Health (AIR-P). Starting next week (Feb. 21), this tool kit will become available for free download from the ATN’s Tools You Can Use webpage.

Here are some of the tips that we and our patients’ parents have found most helpful:

1. First, ask your child’s doctor to screen for any medical issues that may be interfering with sleep.

2. Prepare your child’s bedroom for sleep: Is the temperature comfortable? Does your child like the sheets, blankets and pajamas? A dark bedroom promotes sleep, but your child may need a night light for comfort. If unavoidable noises present a problem, ear plugs or a white noise machine may help. Keep the bed just for sleeping, not for playtime or time outs. And try to keep the environment consistent: e.g. If you use a night light, leave it on all night.

3. Maintain good daytime sleep habits: Have your child wake up around the same time each morning. Try eliminating daytime naps. Help your child get plenty of exercise and sunlight, but avoid vigorous physical activity within three hours of bedtime. Likewise avoid caffeinated food or drink (chocolate, cola, etc.) in the evening.

4. Prepare for bed: Keep bed time consistent, choosing a time when your child will be tired but not overtired. Develop a calm and consistent bedtime routine. Keep the lights low.

5. Consider using a visual schedule to help your child learn and track the bedtime routine.

6. Teach your child to fall asleep without any help from you. If your child is used to sleeping next to you, substitute pillows or blankets. If you can, leave the room. If this is too difficult, stay in the room without touching—for instance in a chair facing away from your child. Over a week or so, slowly move your chair toward the open door—until you’re sitting outside.

7. Teach your child to stay in bed. Set limits about how many times your child is allowed to get out of bed. Use visual reminders such as one or two bathroom and drink cards per night. Put a sign on the inside of the bedroom door to remind your child to go back to bed. If your child does get out of bed, stay calm and put him or her back to bed with as little talking as possible.

8. Reward your child for sleeping through the night, and remind your child of your expectations. Consider drawing a contract of expectations and rewards. Small rewards are best.

Helping Teens Sleep
Like young children, teens need adequate exercise and sunlight and consistent waking and bed times. However, adolescence brings hormonal changes that can delay the onset of sleepiness until late at night. Unfortunately, many middle and high schools start early! Find out if a later class schedule is an option. In any case, work with your teen to set a good bedtime. And teens who drive need to know NEVER to drive when sleepy.

Helpful steps include having your teen finish homework and turn off computer and TV at least 30 minutes before bed. Keep lights low. A light snack before bed can help growing teens sleep through the night. Finally, it’s probably a good idea to remove electronic devices, including TVs, from the bedroom.

Have more sleep questions? Join us for a live webchat with neurologist and autism sleep expert Dr. Beth Ann Malow, M.D., of Vanderbilt University Medical Center, on Feb. 21, from 1 to 2 pm Eastern. Join via the Live Chat tab on left side of our Facebook page.

I have stayed on a routine since my son was born. As a baby, he was only put in his crib when it was time to sleep. Over time he learned to associate his crib/bed with sleep. It’s automatic to him now. I think that was the key to him having excellent sleeping habits to this day. He will put himself to bed when it’s time. Even when he sleeps somewhere else, he has no trouble at all. :)

I have trouble falling asleep at night because I find it difficult to relax my mind, I’m just thinking about a lot different things and they keep me up at night. It usually takes about an hour for me to fall asleep.

I also have an issue with a quiet environment. If I can’t hear anything around me, then my mind wanders and I might even make up a sound in my head just so my ears will have something to do. I will often leave a song playing on my iPod while I sleep, then my brain focusing on following the lyrics and I fall asleep more easily from mental exercise. Reading before bed is also effective.

However, once I fall asleep, I stay asleep all night. My mother often told me that I sleep like the dead.

My daughter who is now 27 had so many problems with sleep which she thankfully eventually outgrew but at 2 years old she woudl wake us up in the middle of the night and she would be counting. We tried Lavender baths and bedtime routines she would go to sleep and then wake up about 1:00 and count for a while.

Melatonin helped us dramatically too. We started off with a small dose and as he got older he needed more. He’s definitely deficient. GNC has it in liquid form but Walgreens/drug stores have it with the supplements too. It’s natural and we’ve never had any negative side effects. We’ve been using it for 6 years now. If only I found it earlier. I did a considerable amt of research on it before trying just to be sure. Its been a life saver for us both! We both get good sleep! Now he’s able to function daily because he’s not lethargic. Keep up with good sleeping habits and you won’t need it every day. :)

These tips seemed designed for typical kids, not the ones we’re dealing with. At 6, my autistic son cannot understand what it means to be rewarded for not getting out of bed. And what does “set limits on how many times your child is allowed to get out of bed” mean? I can set all the limits I want–he doesn’t understand or follow them. Sometimes “tips” like this make me feel crazy, because I don’t find anything useful in them, as hard as I try. So it seems like I’m denying all the helpful advice that the experts are offering, when in fact all that is being offered is good intentions and meaningless words.

KarenLynne, I understand what you are saying. My Godson does not fit the normal spectrum. He does not fall asleep right away and even though he is 2 years and 2 months old he still wakes like a newborn at night. He is in bed by 7:30 but up by 10pm and then again by 1-130 am. His mother and him are up by 5am to get ready for work and daycare. Since they live with me I notice so many things about his behavior but his mother ignores it. I have a God-daughter that is Autistic adn my God-son from another friend shows all the signs but she wont listen to me. Karenlynne I feel your frustration because when you have a child to young to understand or not mentally able to yet how do you set the noraml boundries?

DonnaJ

February 17, 2012 at 4:37 pm

When our kids have autism – sometimes the ages are irrelevant- my 20 yr old doesn’t understand boundaries – just that he is not tired and can’t understand why I am being so unreasonable about expecting him to be in bed for such an enormously LONG period of time (remember, we need to look at life as they see it – if they were typical, we wouldn’t be reading this blog). You can set and reinforse all kinds of normal boundaries but if you are dealing with a child with autism – all along the spectrum, you’ll need something more than what is in this article and it will be different for each person, and remember Renae, it’s always easier to see in other people’s children their problems and judge – chances are she’s not ignoring but rather trying to cope and figure out what to do and how to get her child help without being judged

karenlynne1111

February 20, 2012 at 1:17 am

Donna J’s comments made me laugh (the part about why her son had to be in bed for such a LONG time). You are absolutely right–we each need way more than that article offered, and every issue is such a mystery to solve. Very challenging. Love people’s comments and responses. I feel so supported.

Hello Karenlynne,
My son is 5 and was just diagonosed with Autism in October. I went to his doctor time and time again not understanding why he was different than my other two children, which happen to be girls. I myself tried everything for him to get a goods nite sleep… Prescription sleeping pills made him see things, he did not want a special blanket and I even tried a special pillow pet for he loves Lightning McQueen. Believe it or not what helps him and has been helping me get rest as well as him is letting him have his favorite movie on dvd and letting it play thru the night. Now I know this sounds crazy but it has WORKED WONDERS!!!! He went from getting up 5-8 times a nite to once. And I can deal with once over 5-8. I am a single parent and rest was something I wasn’t getting. I pray you find a resolution to help your son.
Many Blessings

karenlynne1111

February 20, 2012 at 1:14 am

Kimshaema,
Thanks for that. Wow, you are still dealing with the new reality of autism. I’m sorry. That’s great that you found something that works for sleep. I hate to admit it, but we are giving my son an antidepressant just for the side effect (drowsiness), and finally it’s working. Now, instead of sleeping all night one time in two weeks, he gets up 1-2 times per week. Now, if I could only figure out what to do about the constant spitting! But that’s another blog.
Be sure to ask for all the respite you can get. Sometimes the regional centers have more benefits than they seem to tell you about up front. Best of luck to you. I wish you strength and patience.

You are not crazy, but I know exactly what you mean. I also had a terrible time getting my son to stay in bed. We tried a lot of different things, but finally discovered that placing a small tv in his room and leaving it on all night seemed to help him stay asleep. We replaced his bed with a couch for a while, because he preferred the narrow, tight comfort it offered. We also got him a weighted blanket. My son is now 17 and does a lot better, although he does wake during the night (but he stays in bed now). It will get better and you are not crazy.

karenlynne1111

February 20, 2012 at 1:15 am

Thanks for your words. That’s awesome you found a solution. We are using meds for now, but maybe when he understands better we can switch to a token system.

I hear ya too, we do the melatonin, strict routine, calm music and light and heavy blanket which helps him to fall right to sleep but not to stay asleep. He’s 5 and still gets up through the night! Believe me setting limits about how many times he can get up and where he can sleep doesnt work for him either!! He has high anxieties and wants to sleep right smack next/on top of ME!!

karenlynne1111

February 20, 2012 at 1:19 am

I hope you figure out a solution. We all do much better at our difficult care-taking jobs when we are rested. We are using remeron, an antidepressant which makes our son tired enough to stay asleep. It’s working for now. Thank goodness!

we do melatonin right now 6mg a night. our doctor upped his dose because he isnt sleeping well still. it still takes between 2 to 3 hours to fall asleep and calm down enough to lay down at night. we have been talking about a sleeping aid other then the melatonin. and my son is only 3 1/2 years old.

My son had a horrible time staying asleep….what helped us in the end was treating his yeast issues. For him nystatin has helped to get him a good nights sleep for over 3 years now. We went off of it for a few months and he was right back at night waking. Still will if he is experiencing high yeast levels. It is a hard thing to get rid of entirely but treating it has saved us as far as sleep deprivation goes! A miracle for us!

By the time my son was about 3.5, he had a hard time slowing down and letting himself calm down to be able to sleep. As suggested already, his bedroom was for sleeping only. And we would ritually read before bed. I finally got a sleep machine thinking to use white noise, but tried ocean wave function, accompanied by guided visualization, and we were off to the beach; including various sensations such as warm sand in toes, spreading fluffy white towel, palm tree providing shade for our faces, light breeze provided by me, etc. Emphasized everything was just right. Not too hot, not too chilly, rubbed his back ‘with suntan lotion. Some nights more elaborate, but gradually simply the ‘ocean’ was enough to cue him to relax. He just turned 18(!) and he still loves his ‘ocean’. (Note: his preference is for ocean waves without distracting seagulls)

I’m curious about sleep disturbance later in the life span. Does anyone know adults on the spectrum whose circadian rhythms are reversed such that they can’t sleep before 3-5 am and remain asleep until 2 or 4 in the afternoon? These patterns can really interfere with training such as college or training classes, appointments and job opportunities.

This is a problem for my 28 year old son (who slept without too much difficulty until he was 19 years old) as well as for other people for whom my agency provides services. We try very hard to get them into a more normal rhythm by all the usual methods of encouraging sleep mentioned above and by trying to not let them sleep beyond mid-morning so as to not encourage the cycle, but often it just doesn’t work. I wish I had an answer other than awake overnight staff who keep them safe in the wee hours of the morning, but we haven’t found it.

Anita

February 18, 2012 at 1:15 pm

My son is 20. He goes to bed about 5am and sleeps until 5pm. He seems to need 12 hours of sleep a day. He has Aspergers. He goes to college on-line which he can do any time of day. I’m not worrying about what will happen when it is time to get a job. We will find something that works for him. I have given up trying to force him into our routine; his doctor agrees. This is just the way he is. After the hell we went through trying to fit him into the public school system, I am just happy that his is learning and totally engrossed in is education. He is learning to be an illustrator and works very hard at it, as it is his obsession. What we should have done in high school and elementary school was a combination of on-line learning and a few classes a day at school that fit into his sleep schedule. As a human resource specialist, when the time comes, I will look for job accommodations that allow him to work from home or on his own schedule. This is federal law under the ADA. Or we will set him up as a free lance artist where he can work the hours that work best for him. The important thing is he is happy and productive, and we’ll take the next step like we have always done. Loving and supporting him and just figuring it out. From the beginning there has never been a manual and nothing I have read that has helped me with my individual circumstance. I have tried all the standards that have been mentioned in this article. I have just finally accepted that if I don’t figure it out myself, it won’t get fixed. The most important thing I have learned over the years is to go with the flow. What is normal for others is not normal for my son. Just find some way you can get your own sleep and support them the best you can. You will find a rhythm that will work for you. Once I relaxed and let him be himself, I have experienced great joy in my relationship with my son.

I agree with KarenLyne1 – these are suggestion straight out of Parenting magazine or for very high functioning Aspergers. The suggestions from parents who are walking the walk, that followed the article were much more meaningful

I think it really depends on the kids and their individual issues though cause gotta tell ya I got a 5 year old with Aspergers and this stuff aint workin for him either…we have managed to help him get to sleep at night but not to sleep through the night and have tried so many different behavior/environment strategies. This is one of the most trying things for me to help him with!!

I too agree that these suggestions are probably everything that most of us have already tried, but please don’t think that those of us with Aspies don’t have these problems. I have a 12 year old Aspie who can take anywhere from 1-4 hours to get to sleep every night. We started with all the basic suggestions this article covered, have tried melatonin, have tried anti-anxiety meds, and after years of searching for the solution my son is still struggling with the same problem. I am now looking into trying to find out if his problem is related to either a vestibular issue or a proprioceptive issue.

My son was recently diagnosed with PDD at the age of 3. Falling asleep is one of the hardest tasks for him. He has a very difficult time slowing down the motor in his brian at night. Like many others who have replied, I feel the suggetions in this article are of the ovious. Information about what to do when all these suggestions have failed would be far more useful. For me, I finally spoke to his pediatrician about the use of melatonin and let me say it has been a life saver for both the both of us! I am not one to jump to medication as a solution, especially when it comes to my children, but melatonin is a natural supplement that is actually produced in our bodies anyways. He takes 2.5mg of the liquid form and whinin a half an hour be becomes relaxed enough to fall asleep, something that wasn’t happening for 2-3hr after I would start “bedtime” prior.Before I started using the melatonin he was overtired, irritable, and miserable throughout the day. He is now a happy, well rested kid, and I am a well rested Mom! If you are stuggling with this problem with your autistic child I strongly suggest that you contact your child’s physician to discuss the option of melatonin. I don’t know what we would do without it!

I’m so happy for you that melatonin worked. It doesn’t seem to help with the kiddos who wake up after 4-5 hours. But there are other options, like the antidepressant we got prescribed. We had to see a psychiatrist, though, because all the GPs told us was, “We don’t give sleeping medication to children.”

Love all the tips here. Here are a few more that helped my SEVEN kids, too when they were little:
One is: Make sure you do NOT allow TV or have exposure to the computer screens a few hours before bedtime. ALL lights stimulate the pineal gland, which signals the body to ‘WAKE UP’!
2- Another is to take advantage of natural powdered GABA and Peter Gillham’s Natural CALM, a Magnesium Supplement (available from most health food stores and at a better price at iHerb dot com). Both help relax and calm the body AND mind at bedtime.
3- Since I had 7 kids, bedtime was always easier when I followed a ‘quiet time’ pattern each night. THIS is VERY important – but WORKS, and I elaborate on the details here: http://www.gomommygo.com/positive_behaviors.html#bedtime
4- And getting ready for a good day at school is also an ART that starts the day before: http://www.edudesigns.org/get_ready_for_school.html#7superstrategies
5- And also many parents use my illustrated behavior charts I offer to everyone FREE here, for an incentive to positive behaviors:http://www.gomommygo.com/thankdontspank.html

By the way – about MELATONIN: From what I have read about Melatonin, it IS good for re-setting the body’s bio-rhythm when used at the same time each night 20 minutes or so before bed and used for 2 weeks straight . After that your rhythm should be ‘trained’ by then to want to go to bed at that time, and shouldn’t need it again for a while or until your schedule changes. But I continue to use GABA and Natural CALM Magnesium every night mixed with water and it really helps to give us all wonderful sleep. Read the directions carefully, do go to the bathroom after drinking it mixed in water, and go ahead and ask your physician if you are in doubt, though most doctors know little about nutrition and concentrate only on pharmaceuticals. Lots of info can be found online about the benefits of these natural remedies.

we use 5mg of melatonin for our 10 year old son. The problem now is not sleeping, it is sleeping independently in his room and his bed all night. He will start out there, then wake up thru the nite and come to us. We have tried taking him back to his bed, but he only gets up again and again, no one gets rest at this point. We have tried the nite lite, the white noise etc. nothing works. HELP!

I feel your pain! Raising 7 kids we had similar problems of all sorts. I compiled my tips on getting kids to sleep here: http://gomommygosblog.wordpress.com/
The only thing I would add, is to make sure your child gets plenty of exercise during the day to tire their little body out and welcome the sleep at night. But never exercise before bed. That makes it harder to sleep!
Here’s that link again: http://gomommygosblog.wordpress.com/
Best to you!

This is a problem for my 28 year old son (who slept without too much difficulty until he was 19 years old) as well as for other people for whom my agency provides services. We try very hard to get them into a more normal rhythm by all the usual methods of encouraging sleep mentioned above and by trying to not let them sleep beyond mid-morning so as to not encourage the cycle, but often it just doesn’t work. I wish I had an answer other than awake overnight staff who keep them safe in the wee hours of the morning, but we haven’t found it.

My daughter had sleep problems from day one…when she was small we would walk or drive, but as soon as we stopped she would wake…later on she would fall asleep, but wake in the middle of the night.
Eventually, as an adult we found recourse in maintaining even hormonal levels, and that permitted sleep. we had tried all the conventional methods and alternatives…including melatonin, CALM , etc but nothing had worked. giving her a hormone shot changed everything. Then because osteoporosis is familial we stopped the Hormone shots and were confronted again with the wakefulness in the middle of the night..
now we have a sleep medication (from a sleep specialist) PROSOM and although we don’t like to go that route, we now have a happy, well rested daughter.

melatonin helps but prolong using melatonin under your doctor’s advice.no harmful side effects.use all the tips in the blog to create a proper environment to sleep.TV and computer are two enemies to the eyes.Keep them away before sleep time.difficult but possible.

All of the above is excellent but if I can show you the Nikken Sleep system
he will overcome his sleep problems. I will show you what I have and leave it with you
for up to 3 weeks to see if it works for him. I have dozens of positive reports from parents
of children with autism who have used the items with great success
Either email me at royalapugs@bellsouth.net or call me at 770 427-4498

In our case what was most helpful in order was the gluten free casein free diet (my son tested positive for markers of gluten intolerance), the treatment of mito dysfunction, the treatment of the fungal, bacterial and parasitic infections he had in gut- and replenisment of friendly gut flora, and nutritional supplementation /nutraceutics related to tested and confirmed defficiencies or additional secondary problems. The post strep condition treatment was very helpful to relieve anxiety and therefore sleep has been improved. Melatonin was helpful in the context of the initial treatment of these conditions and we stopped when improvement was very evident.

Look at this product by The Victoria Chart Company at http://www.victoriachartcompany.com/sleep-chart.html.
“Our Good Night, Sleep Tight reward chart creates the perfect bedtime routine for children. It provides a step by step routine with tips and guidelines to help you give your child a healthy nights sleep and for you an evening to unwind.”

Well worth its weight in gold for a good nights sleep by the WHOLE family!

Hey Guys, This has nothing to do with sleep, but I saw this awesome project in the newspaper called Joshua’s Eyes. It looks really cool. There’s a song about a boy with autism that is amazing and they are writing a children’s book too. It’s worth checking out. http://www.joshuaseyes.com.

I read the professionals piece, and all 53 of the comments posted, and offer the following comments as a support to all:
In my work over the last 30 years with many families at all points on the lifespan and ASD spectrum, the common thread in all of this information is that there IS INDEED a sleep problem component in autism, and it is as ‘individual’ as the individual! However, this kind of sharing as I have just read is THE ONE THING that is most helpful in not feeling alone, AND in helping decide what may or may not be the next idea to work in your situation. I can truly say, that MANY of the comments are things families I have known have tried or done, and it is the “beyond-the-usual” things that the professionals suggest. As I see it, when all the ‘typical’ consistency and programs have been in place and still no success, then it is time to ‘try another way’. Every program in the ASD world has a ‘base’ or ‘foundation’ point, with some commonalities, and then a wide array of other options or ideas or opportunities for individualization. For those who work best with visualization, think of roots and soil, trunk and bark, and then branches, twigs, sprouts, blossoms and leaves.
Therefore, I see growth and expansion of knowledge in such mediums as this combined professional and parent blog and thank all of you who take the time to share with others amid your really busy personal life circumstances and situations. It is something that did not exist when I began my work with individuals and families in the early 80’s.
Thank you for listening to this commenter also!